Wednesday, November 28, 2012

Just a Little Diddy.......

Monday. The day started out like any other Monday. Only on this Monday our journey with melanoma took another turn down the cancer road.  When I picked Jillian up from Steve’s office, it was quite obvious that there had been changes since I’d last seen her. She was with Steve’s family over the Thanksgiving weekend so  I hadn’t seen her since last Wednesday. She was having a real difficult time walking. In fact, Steve had to carry her into my truck. Once Jillian was settled, we took off for our weekly Monday blood draw and of course breakfast.


Jillian and I have become “regulars” at a local breakfast restaurant. She looks forward each day to her egg and bagel. I look forward to my cup of coffee, and our morning chat. I knew it would be difficult getting her in and out of the truck that morning so I asked Jillian if she wanted to use the wheelchair this time, or to try walking. I suppose you can guess which option she chose. Walk. Okay then. Let’s walk. By now, I know enough about my daughter not to try and change her mind. Another thing  I  never want to do is to take away any sense of independence she still has. As difficult as walking has been these last few weeks, she never stops wanting to try. It doesn’t stop her from doing much, it just takes longer and with greater effort.

When I got her out of the truck, I knew within two steps that we weren’t going to make it. The left side was just too weak to support her weight. So, as she was standing against the truck, I walked back to get the wheelchair. I didn’t get far before she crumpled to the ground. It happened in slow motion. She just sort of folded into herself.  I rushed to her side to help her up, only she wasn’t going anywhere. Her eyes were fixed and staring into space. Just blank and open. She wasn’t with me. I rushed into the restaurant and had one of the waitress’s call 911. Several people came outside to help, to bring blankets to cover her up. In what seemed like a lifetime, Jillian came around. It took her a few minutes before she was fully with it, but I was never so happy as I was in that moment to see her talking and joking with the EMT.

While in emergency, Jillian had a CT scan of her brain which showed that there was change. The tumor looked larger, and there seemed to be swelling and bleeding. Jillian was admitted into the hospital so we could find out what what was going on. She had an MRI that evening which would show us a clearer picture. Which it did. It confirmed that Jillian’s tumor was indeed larger, that it had shifted, and that there was swelling and bleeding. And then we got the words that no mother ever wants to hear. “The chemo isn’t doing enough. I’m sorry, but I know you have talked with Dr. Lao about this possibility when you were at U of M last September.

These are difficult......................................................................................................"

White noise. NO. It has to be working. This is my Jillian. We fight, we try something else. Just fix this. Shit.

I can’t really remember everything after that except that Steve was on one side of Jillian’s bed, I was on the other and Steve and I were holding hands. As a mama, you’d think it was me giving him support. But it wasn’t. I was reaching out to him for support, and he gave it.

This is where the content of my story changes. Last night while I was writing this post, my mind closed after the first few paragraphs. I was tired and exhausted and the thoughts and words weren’t coming. So I put down my computer and went to sleep. My bed felt pretty good after the night in the hospital on that hard couch. I woke up with that O' so familiar nagging feeling that what I was writing about wasn’t what God needed me to say just yet. So with my eyes not even open yet, with tears running down my face, I listen. I’m hoping that the kids won’t mind.

Jillian and Steve met over four years ago. Jillian was 19, Steve was 20. He was there with Jillian that day when we first heard from our primary doctor, “I’m sorry to tell you this, but you have melanoma. It’s Cancer”. I can remember the doctor talking and explaining what we needed to do. A surgery to excise the area around the mole that had been removed from her back, along with two sentinel lymph nodes ….check up’s every three months. The pet scan that was miraculously scheduled one year later which plopped us right square in the middle of nowhere; inside the belly of the sneaky black beast. Stage IV melanoma.

Four years later Jillian and Steve are still together. Some may think that a young kid at twenty would run for the hills, but this young man has stayed and loved and supported Jillian through all of her treatments. Through the tears and everything in between. He is still here. And believe me, it hasn’t been easy. He has had to deal with appointments back and forth to U of M, while juggling his own college schedule, plus a full time job. And mama bear. But he is still here.

Can you look back to where you were at the age of twenty? Or if you are around that age, what are you doing? Do you picture yourself caring for someone that has cancer? Do you even know what it means when you hear someone is a caregiver to a person with cancer? Do you think about what it’s like to have no use of your left side? It means helping that person to get in and out of bed. It means help with getting dressed in the morning. Sorting and dishing out meds. Preparing and cutting up food for a meal. Bathroom needs, hygiene. Think about it. This young man has seen more than most of us will see in their lifetime. He knows the meaning of commitment. He is still here. I know his own mama bear is proud.

Two weeks ago, after Jillian’s last chemo treatment that Friday, I dropped her off to Steve after being at my house all week. They hadn’t seen each other since Monday. I saw the pure joy in his eyes when he saw her. I saw the love. There was no disguising it.  It reminded me of a time a while ago when Jillian and I were driving somewhere last year. The song” Jack and Diane” was playing on the radio. She turns to me, smiles and says, “That’s me and Steve. Just two poor college kids”.

Jillian is now back home with me with Hospice care. Steve has moved in and we will work out the details as they come up. Their other roommates and friends, Tia and Jared, are staying off and on too as their schedules permit. That makes 6 dogs in the house. Six BIG dogs. But what’s a little hair?  For now, Steve and my family are making it work. Team Jillian.

I’ll post more about my thoughts as a mama, but for today…

Just a little diddy about Steve and Jillian……..

Love~

19 comments:

  1. Oh, Sue...your writing always brings tears to my heart. I know how hard this has all been for you, Jillian, Steve, and all of Team Hayes. Jillian has been blessed with an excellent group of caregivers.

    I am praying for you, and for Jilly. Know that I will always be no further than a phone call away, day or night. Love to all...

    Barbara

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  2. I am inspired by your devotion and all the support that continues to pour towards you and your family through this journey.

    My prayers and thoughts are with you all!

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  3. Dear Sue wow you are a very good story teller.Your words pour out the truth of Jillian's story. Please pat Steve on the back and tell him God is smiling at him daily. That kind of support is so important at this stage. I remember the day they told Tina as I sat at her bedside that the chemo has taken her heart and there was nothing more they could do. As a mother she had many, many thoughts that day but I don't remember much except those awful words from the doctors. But Jillian reminds me of Tina she also walked everyday. She said if she stopped that would be it. I'm sure Jillian has been such a blessing for you through her journey. Because as I learned the sick are those who help those around them get through the journey. Caregivers give 24-7 and get drained but like the girls they also won't stop. Please know my heart and prayers are with ALL of you. The road ahead is not straight but listen to me please.....God will guide you all the way. Through the tunnels of darkness into the light and to the beauty of sunshine and bright stars. God bless

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  4. I am lying here unable to sleep at 3.30am in New Zealand with tears. I hope, wish and pray for a much warranted miracle for your beautiful daughter. Steve is a rarity and absolutely beyond amazing!

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  5. Dear Mama Bear,
    My heart aches for you. For Steve. For Jillian.
    The Incredible Love is evident in your post and in your lives - That Love WILL get you through! Agape Love :)

    Lots of Hugs, Love, and Prayers,
    Danae

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  6. I'm so sorry that you are all going through this. I'm in awe of the love you all share. You all have my prayers.

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  7. Tears here too! I'm so happy that Jillian has been able to experience such a wonderful love! I'm proud of all of you. Jillian you have inspired so many, many of us Melanoma Warriors as well as other cancer warriors. Your spirit is unrelenting! We love you and please know we are lifting you up in prayer!

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  8. Dear Sue,
    That was a whole lotta little diddy,and no one,NO ONE can say things like you can say things.
    Thank you for sharing Steve and Jillian's story.
    God bless you all.
    Much love,Valerie

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  9. Dear Sue,
    That was a whole lotta little diddy,and no one,NO ONE can say things like you can say things.
    Thank you for sharing Steve and Jillian's story.
    God bless you all.
    Much love,Valerie

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  10. Dear Sue,
    That was a whole lotta little diddy,and no one,NO ONE can say things like you can say things.
    Thank you for sharing Steve and Jillian's story.
    God bless you all.
    Much love,Valerie

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  11. Visiting from Kisma's blog, and so glad I stopped by. Just, in a word, amazing.
    Amazing story, amazing daughter's courage and strength, and amazing love: from mother to daughter, man to woman, and God to us.
    Will keep you all in my thoughts and prayers.
    Thank you for sharing this beautiful diddy.

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  12. Thinking of you, Jillian, Steve and all of Jillian's friends and family. Beautiful post, Susan. <3

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  13. I'm visiting from Kisma's blog. Jillian sounds amazing. Her strength and courage comes from her Mama. I'm in awe of Steve's dedication to your daughter. Thank you for sharing you story.

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  14. I send my prayers and tears.
    Love,Terri

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  15. <3....and prayers for comfort and peace.

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  16. I sat at my desk and work with tears silently rolling down my face while reading this today. I could just FEEL the love and pride you have in your girl.

    None of us can make this easier for you, but we all (virtually) have our arms around you, holding you up.

    Please let Jillian's Steve know we think he's a hero.

    Prayers and love.

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  17. You, Jillian and Steve continue to be inspiring in so many ways. Thank you...and my thoughts are with you. I can't imagine...I'm speechless...and prayerful.

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  19. Jillian has always been a pleasure to be around.
    What an amazing young girl. I'm thankful for Steven bringing her into our lives here in Bay City, and for the times we've had together with her. (She takes Uncle Marks teasing very well, with that cute little grin of hers)
    She lives life with such Zest!....a great reminder for us all to do the same.

    Hugs go out to Jill, Steve, and their families & friends.

    Uncle Mark & Aunt Mary

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